Seriously? You what???

Once again, we were in the news. Ashley, the lovely journalist from our local paper who interviewed us last year, really cares about what happens to us. She’s a genuinely nice person who wants to help others, and so they published an update in the paper.

A lot of people I have spoken with, have been surprised when I mentioned the backlash against me personally, whenever a story was published about us. Some if it comes from those who couldn’t possibly understand our situation, some comes from those who identify as having a disability, and sadly, some comes from other parents in the autism community. Fortunately I have some fabulous friends who defend me and try to shield me from the worst of the comments and nastiness.

I know I’m a very naive person (because my friends and my husband are constantly telling me that), yet I am still surprised when people can be so completely contradictory (i.e. two-faced). After the latest update in the paper, there was once again a huge debate on the Bendigo Advertiser’s facebook page, about how I was a liar and just using my son to get handouts. I stay clear of that sort of stuff, but it was brought to my attention because some of my friends were defending me and warning me about the person making the most comments. This woman had actually contacted me through Alex’s facebook page prior, commiserating with me as she was also the parent of a child with Autism. I have taken screenshots of our conversation if you wish to read it – the typical sort of chat that autism parents will often do.

Like I said – I’m naive, because at the same time I was having this chat with a fellow Autism mother, she was making some unsavoury comments on a public page. The below screenshots were taken today from the public page, so you can see by the dates that she was chatting to me privately, playing nice, while still posting the below (definitely not nice).

The irony is, that the entire time I have been speaking with journalists, I have been telling them that we are not the only ones in this situation. I have asked people to stand up and tell their own stories, so we can make the public aware of just how many families are struggling with not enough resources. I asked local friends for volunteers, and they also asked around, as the Bendigo Advertiser was keen to run a story on local families with kids with Autism. Nobody came forward. I found two parents interstate who were willing to share publicly, but the journalists here did not want to do stories from interstate.

During my last meeting with Ashley, she asked me what I wanted to say to the Bendigo readers. I told her that I didn’t know how to say it, and perhaps she could fine-tune the words, but what I felt was: “Guilty. I know there are so many other people out there who are struggling, who are worse off than us, and yet here I am, asking the public to help me. I don’t like asking for help, I don’t like begging, but I just don’t know what else to do.” I have discussed with close friends the possibility of starting a charity that can give to families who are struggling, but the sheer amount of work that would take is simply beyond me at the moment.

As far as Alex having been pulled out of school, I covered this in a previous blog, and due to his severe anxiety issues, Alex is simply unable to attend the SDS again. His teachers in the past have been great, the new principal tried to accommodate us but there’s only so much that a school can do. He looks at the buildings and becomes clearly agitated, so short of demolishing the buildings and redoing them, we would need to overcome his major anxiety before he could go to that school again. Assuming we could figure out how to get him up and dressed of a morning, and assuming we could get him out of the car, all without having to physically restrain or drag him! At the moment it would require two strong guys to get him there and keep him there, and he would be completely traumatised by the whole experience.

Anyone who has ever been to our house, knows that Alex is the first member of the family you will see – he is far from hidden away! He is not a disappointment to us at all, and we certainly don’t want to hide him away. We wanted a new bedroom for him at a bit more of distance from ours so that we could sleep. We also wanted him to have a play area where a support worker, or one of us, could be with him and enjoy time together, without him being troubled by the noise the other kids were making (or vice versa). We also wanted a therapy room for him – his paediatrician, occupational therapist, speech therapist and psychologist have all said that he needs a separate area that is only used for therapy, to enable him to concentrate on learning, and also help him to adjust to the idea that there are places you ‘work’ and places you ‘relax’. We are hoping this will help him be able to integrate into a school again, as well.

Yes, I’m asking for a lot. I’m asking for sleep, I’m asking for a small amount of sanity, I’m asking for my son to have a chance at a life, and I’m asking to be able to spend some time with my other children. There are times I add a request for not being physically assaulted and having to live with the constant threat of an explosion, but I figure if I could get some proper sleep then I would be able to handle those things better as well.

I know I will never be able to earn an income, go on a holiday, have a hobby, babysit any grandkids I might be lucky enough to have, or see my husband retire. But I would really, really, really love to get some sleep, and have my son be happy (most of the time at least). Just enough so that the next day doesn’t seem so far away, and I won’t constantly be living from hour to hour, or minute to minute.